Yes.It’s
true.I have been asked numerous
times…if I could take the Down syndrome away, would I?Such a controversial “hot topic”.Would I?Would I take the Down syndrome out of you if I could?No.I wouldn’t.Let
me explain…

Yes…life would be “easier” for you in some respects if you
didn’t have Down syndrome.Even
easier for me in some respects, as well, if you didn’t have Down syndrome.But then you wouldn’t be you.

You wouldn’t be the you I know you to be.The girl that lights up a room with her
smile.The girl that encourages
others to be accepting of differences simply by being who you are.The girl that tries harder than anyone
I know to learn new things.The
girl that gets more joy from making others happy than being happy herself.The girl that captured the heart of our
Governor {who even keeps your picture on his desk}.The girl that is memorable to those who have met you only once. The girl that is just as sassy and spunky as any other seven year old on this earth. The girl that just by being you, encourages others to live better. The girl that has shown
countless people that living with Down syndrome does not mean you are
suffering.The girl that applies
herself with every ounce of her being.The girl that hugs, loves and accepts every single person she meets.

Would I love more than anything for things to come a little
easier for you?Absolutely.For you to be able to keep up
with your peers?Sure.

But then…then you wouldn’t be you.The you that you were born to be.The amazing and wonderful you.So I ask myself…If not you…then who?Who would be able to accept this
amazing challenge to change the world.Change the world.A big
ridiculously huge task that you are taking on like only you can…with the most
beautiful smile on your face and sparkle in your eyes. And believe me, baby girl...you are making a change. One that I can't wait to see. To be a part of. Acceptance. It will happen...and you will be the face of change.

So…on this the 1st day of October 2013 (the first
day of National Down Syndrome Awareness Month), I am telling you this…

You, Kayla Grace Kosmalski, were perfectly
made. This I know. Extra chromosome and
all.And yes, while you may face
obstacles and challenges in life, I know that no one on this earth will handle
it with more grace than you.No
one will smile more brightly than you.No one can change the world like you.You are the beautiful face of Down syndrome.Of perfection.Of acceptance.Of love.You are the amazingly wonderful one and only you.And I am one proud Mommy.One very proud Mommy.

Friday, August 16, 2013

Well hello there my friends. I am sorry to have left you hanging for a blog post since November. Has it really been that long? Eight months. Really? Wow. Where has this year gone? Right now I am I am making invitations for Logan's first birthday party {it is gonna be little man theme...think mustaches and bow ties and such...and a ridiculously cute one year old...but I will have to fill you in on Kayla's Beiber party first or I might get in trouble}. I am also getting my big girl ready for second grade. How is that possible? A one year old and a second grader...I swear I never even had a chance to blink this year...

There is so much to catch you up on but that will have to wait for another day. Today I am focused {and that never happens}. Today I want to share Kayla's book with you. This is something I have created every single year at this time to give to her new teachers. I have created a book for Kayla since she crawled/cruised her way into Ms. Debbie's preschool class at the baby age of two. Filled with fear and worry I wanted to ensure that everyone that came into contact with Kayla would get a small glimpse of her history but more importantly our expectations and hopes for that school year and her future.

I must confess...this idea is not my own. I first learned about creating a book or notebook to give to teachers at a NDSC Convention back in 2008. Since that time many friends have asked me to share my template which I would if I could but I don't have one because I lazily click and drag pictures from my iPhoto into an iBook add a little story and click order. It is a very simple process that I imagine can be done using any book creator (and if I say it is simple...I promise it is simple...remember I haven't blogged in 8 months...yeah...). Kayla's book is a $15 softcover book but packs an immeasurable value.

Below I have added each page picture by picture so you can read through it (no don't scroll down yet...wait...there is more that I have to say). This book can be done in a number of ways. It could even be just a few printed pages stapled together. You don't have to include pictures but I have always believed that pictures help convey the story. I just don't do pages stapled together so I choose to have mine made into a real book. I know...I am always over the top...I need help for that....maybe some day...Besides...what is likely to sit out on a teachers desk and be shared? And I promise you...if you create it, it will be shared!

Here are the things that are important for me to tell every year...
......Kayla is loved and supported and we are involved...in a lot of stuff (which should help show how involved we plan to be with her education). This may come off as bragging a bit but isn't that a good thing? She is my kid for goodness sake. I should want to brag and shout from the mountaintops all of the amazing things she has done/achieved!
......We expect the teachers to have the same expectations of Kayla that they do of her peers (she just may need a few accommodations or a helping hand).
......Kayla's strengths and weaknesses (including areas that she needs help with in therapies).
......Any and all of Kayla's personality quirks and idiosyncrasies.

I throw all of this together in a cute story telling way and voila...Kayla's book is created. It's important for me to tell it from Kayla's point of view. She's the student. She is the one they need to get to know...not me the overbearing mama bear. I know it's a bit over the top but I promise you the teachers will love it...and keep it.

So I know your last question...why bother? Why create this? Kayla has an IEP, right? Isn't that enough? No. It's not enough. Yes...Kayla has an IEP. It is personalized to her needs but it certainly isn't personal. This is my opportunity to share how amazingly wonderful Kayla is...

Enjoy...

Here's to hoping you and your child(ren) have an amazing school year!

We have a little over a week until I have to fill the backpack with pencils, notebooks and folders and send my girl onto second grade. Until then, I am soaking up each sun filled day...

Thursday, November 29, 2012

A bit distracted. I type with my right hand as I cradle my sweet baby boy in my left. At just two months old he is wearing a 6 month super soft fleece sleeper, smelling like a new baby, breathing deeply. The rhythm of his breath catches me in a trance. How can life be this perfect? Back to September 26...Rick, Kayla and I left the house a little after seven in the morning.

We were on our way to welcome our baby boy into the world. As we arrived at the hospital, my Mom was standing in the parking lot in a parking space that she was reserving with her body...in the front row, nonetheless. That's the kind of person my mom is...selfless and a bit crazy...and I couldn't appreciate her more after my 40 weeks of pregnancy.The emotions were overwhelming as I kissed Kayla goodbye for the last time...it would be the last time I would see her as an only child and I couldn't hold back the tears. Guilt has been weighing heavy on my heart and this was the moment that all of those emotions drained from my body. As Rick and I walked away from Kayla and toward the front doors, Rick and I held hands nervously expressing our love towards each other.As we entered the hospital, we stopped at registration and as I answered the dozens of questions needed to be admitted, my anxiety was building. I have always had the amazing skill of using humor when I am nervous...most of the time those jokes are ridiculous...and this day was no different. As the receptionist took my information, she asked if my husband spoke English...my response was yes but I don't think he understands it. Ridiculous joke, but she at least thought I was funny and even encouraged my humor by saying most men don't...Moments later we were walking toward our future as the parents of two. Through the double doors, up the elevator, down the hallway to the left, then right, then through the double doors on the left into preop room #4. We opened the curtain, I stepped inside and I was immediately transported to May 13, 2006...the day we were blessed with Kayla but encountered more pain and fear than any other day of my life.

As I looked around the room I envisioned being there on that day, with Kayla. I envisioned myself lying in bed, holding my daughter, wondering if I could ever truly love her. Wondering what my life and my future would be like. At that moment I was paralyzed with fear. Tears streaming down my face, I turned to Rick and I knew. I knew by the look on his face that he was there with me, too. We were both at that place of fear six years ago. He held me as I cried. I cried for Kayla, for myself and for the fear of the unknown...the birth of my baby boy.

Seriously...he is good for a laugh...even in tough situations. And my doctor...best ever.

At 9:30am I was as ready as I would ever be to go to the operating room. As I was wheeled down the hall and into the sterile white room, my heart sank. I looked around, taking everything in...but the first thing that caught my eye was over my left shoulder...the bassinet. The place where my future changed forever. The place where I saw the air taken from Rick, as if being punched in the gut. The place where those two words were whispered just 2,328 days earlier...Down syndrome. Those two little words that would change my life forever...but in a way I couldn't comprehend on that day. On that day I was overwhelmed by fear and there was no room for anything else in my body.Again, back to the humor...as I was leaning forward to get my spinal, my OB reached out his hand for me to squeeze. As I squeezed, I realized I was squeezing the hell out of the hand of the man that was about to perform surgery on me. The man that was going to have to hold sharp utensils that were going to cut into my body with the hand I was squeezing...genius. As I expressed my concern in a light hearted joke, the room broke in laughter. While I was trying to be humorous, I remained concerned. I was trying to cut my own tension...epic fail.Within a minute of getting the spinal, I was vomiting. Yay. Oh how I recall that from my c-section with Kayla. I swear it was the grape flavored fizzy cocktail they gave me to "settle my stomach"...um...not so much. I would rather do shots of tequila...and I hate tequila. After the vomiting stopped, the anesthesiologist explained that I was getting sick because my blood pressure dropped. Once everything was under control, Rick was brought into the operating room and the procedure was underway.

As the doctor began the procedure my mind raced. The what ifs and worries overcame my body. I tried to go to my happy place (on a hammock swaying beneath two palm trees in Hawaii, if you must know). It was no use. There was no escaping my reality. That old saying came to mind...pray for the best but expect the worst. That is truly what I was doing. My doctor asked Rick if he wanted to stand to watch...and he did. I felt an extreme amount of pressure, heard the doctor say "he's a big boy" and within seconds I heard his amazing cry. "He is beautiful, Amy" were the first words out of Rick's mouth. He then nervously followed the doctors to the bassinet area where they examined the baby. As I lay strapped to the table...I just watched over my left shoulder. Seconds passed like minutes and minutes like hours. I watched him kick his chubby feet and clench his tiny fists.Logan Ryan...born September 26, 2012 at 9:53 am...weighing 9 pounds, 6 ounces...and measuring 20.5 inches long...and yes...in case you were wondering...I am very glad I didn't have to push him out! Have you seen the size of his head?

While I heard some talk back and forth, I wasn't sure how my baby was...was he perfect?At that moment all I could think of was Kayla and the moments and days and months that I had robbed her of my unconditional love...and I cried. I wept in the operating room tears of overwhelming joy for my perfect baby and tears of regret for Kayla.

Holding Logan in my arms for the very first time I told him how beautiful and how perfect he was...just like his big sister. And I truly meant that...

I wish I had gone back to that "sacred ground" before giving birth. To leave it all in the past...but in that moment I gave it all back to that operating room...all of the pain...all of the sorrow...all of the regret...I left it behind. I continued to shed tears of joy as I realized the amazing place that my life has brought me to. While I never would have wished or dreamed for Kayla to have Down syndrome, I have come to realize that she is more than I could've ever dreamed of...and I know Logan will be the same.Once we were in the recovery room, Kayla was the first to visit. She came into the room with a shy, nervous, yet excited smile on her beautiful face.

She was excited to meet her baby brother but wasn't quite sure what being a big sister would entail. In that moment it was just us...our family of four. Kayla was more concerned about her mommy than anything else. I read the worry in her beautiful blue-green almond shaped eyes as she nervously scanned the room...from the wires to the IV to the machines, the concern grew even greater.
Holding her brother in her arms, she was nervous but proud.

That moment made my world complete. As I held back tears I thought of how much I always wanted a sibling and how amazing their bond will be. A million things raced through my mind but the one thing I kept coming back to was the everlasting friendship and love that these two will share.

After holding Logan for a few minutes, Kayla went into the hallway to get her grandparents. It was their turn to meet Logan. From beyond the 1980's inspired pastel curtain, I heard her sweet voice saying "Hey guys, come on. I have a new baby brother. His name is Logan. You wanna meet him?". That girl can always put a smile on my face...and in came the crew...my mom and Rick's parents. All with tears in their eyes. They didn't have to say it, I just knew. I could sense their relief. They were glad that this time was different. That all was ok. And while none of them would trade Kayla for the world, each of them know what those hours and days after her birth were like. And we cried.

This girl has been my world and I hers. My biggest worry since the day I found out I was pregnant was how was I going to be able to keep her world "normal". While it was just an hour post-surgery, I knew it was important for her to be in my lap...sharing that place with her baby brother...that spot that was solely hers for over six years.

It was important to me to show her that she wasn't being replaced, she would simply have to share.

Onto our room...4B20I am so in love with my husband for realizing that I needed a celebration this time. I needed everyone to be happy for us...to celebrate this new precious life. Going Kelly Hampton style, Rick surprised me with my favorite champagne, toasting flutes and lots of decorations to celebrate this baby boy in style. Every baby deserves to be celebrated the way we celebrated Logan. It was amazing!

It just felt right. Surrounded by those closest to us, we toasted Logan and handed out favors. My heart was happy.

Logan's godparents brought us the most amazing gifts...SNACKS! Lots and lots and lots of snacks. Note to self: Next time I visit anyone in the hospital take food. For all of those meals that are simply inedible, cheese crackers to the rescue!
Honestly...my life has never felt more complete...my heart this full...

I mean seriously...how can life be this perfect?

How did you guess I didn't do her hair? Just kidding, Mom...
Kayla was excited to open her Big Sister gifts...a personalized Big Sister book...and a special night for just for Mommy and Kayla at the Justin Bieber concert...more on that another time {and yes...it was amazing}

A lot has changed in six years...Daddy's can now stay with the Mommy's. This entire hospital experience was so different than when we had Kayla. I could have used Rick then. I needed him throughout the night...when it was dark and I was alone. I needed his reassurance that all would be ok...and this time, I needed him as my support person to get up with Logan so he could bring him to me for feedings. Well...fail. I don't know if I have mentioned this before but Rick snores. Loud. Like a freight train. Ok...he is going to kill me. He hears nothing. Our beds were separated by four feet and the baby's bassinet...so I couldn't punch him like I wanted to...joking. In all seriousness, one evening I called his name. Over and over and over. I was afraid the nurses were going to come in I was saying his name so loud. I needed him to get the baby...our crying baby. He heard nothing. I couldn't get up because of my c-section but I needed to get the baby. I looked around, found a bottle lid and chucked it at him. It hit his face, bounced off and he never flinched. Not once. I don't know why I expected him to wake...he didn't even wake when some scary looking guy came to take my blood at 5:30 in the morning...but fast forward to the next day when Dr. McHottie came into my room at 6am and announced that he needed to check my uterus and I was thinking check away...Oh sure, you wake up then, honey...

Finally...time to go home...it was important to make Kayla a part of our departure from the hospital. I wanted to make sure that she knew we were leaving with Logan...and more importantly couldn't give him back. She helped get him dressed to go home...

I knew Kayla would likely lose her mind when she saw me get into a wheelchair. Her main concern had been me and how I was feeling and if I could walk. I didn't want her to hate her brother for hurting her mommy so I of course sucked up all of the pain and did as much as I could to prove to her that I was just fine. Knowing I had to leave the hospital in a wheelchair, I thought fast. As we called for escort, I explained to Kayla that all mommies leave the hospital in a parade. They get escorted with their new baby in a wheelchair to their car. I told her she had the most important job...the job of the big sister was to lead the parade...and she did...holding my hand, staying right by my side.

As we went through the halls we were singing "the going home parade" song that we made on the fly as she shook her box of peanut m&ms to add to our production. Seeing the excitement on her face reassured me that life will continue to be amazing and she will be ok as long as I continue to include her. Even though life gets busy and we often want to do things quickly, letting her help has been the best adjustment for all of us.

During our drive home, Rick nervously drove slow and Kayla sang "me and my family"...this site will never get old. Two car seats. Two kids. I still can't believe it...

We were welcomed home by signs and balloons...our parents couldn't be any more wonderful. My mom stocked our fridge with groceries and Rick's parents decorated with balloons, a sign and brought over a Honey Baked Ham...so good not to have to worry about cooking...quite possibly the best part of having a baby {well besides actually having a baby}...

This is what I call getting the hand. It goes something like this...
Rick: Kayla, come stand next to Mommy and Daddy.
Kayla: {insert evil eye here}
Rick: Kayla, come on, come stand over here so we can go inside.
Kayla: {hand up} Daddy, Daddy...just...just chill

And we lose...as she remains right where she was...oh...memories...

Just three days old and we were home!

Later that night as we were going to bed, Rick looked at me and said "what was your favorite part?" {Kayla asks us that after each thing we do}. I smiled and said "all of it". I then turned to Rick and asked him the same and with tears in his eyes and a smile on his face replied "driving home as a family of four".Nights have been sleepless, yes. But I have also broken the cardinal rule of sleep while he is sleeping. But honestly, how can I sleep when I can just stare at this most perfect being while he is sleeping...I don't want to miss even one second because I know how quickly the days pass. Soaking it all in, knowing tomorrow and next week and next year are coming faster than I can prepare for...

I think I slept a total of an hour our first night home. I woke with every whimper, cry, deep breath, and sigh...oh there is nothing sweeter than listening to a baby sleep.

Logan's first photo shoot...and I have to say...he was an amazing model...And don't even get me started on how much I love this picture...I swear I tear up every time I look at it...

Logan will likely want to kill me over these pictures when he grows up...but how could I resist? Dressing babies up in crocheted animal hats and diaper covers is just far too fun. I think I was giddy when I was taking these pictures...Trying to keep life fun for Kayla, we celebrated Kayla for weeks. In fact, we are still celebrating her. The Monday after we brought Logan home we had a movie night...because who normally has a movie night on a school night? We do...and we had a concession stand filled with her favorite things...and I let her eat anything she wanted...because Big Sisters deserve it {don't worry...she didn't eat all of that...I know I would have as a kid but she has control}. While we didn't watch the Lorax {she chose to watch episodes of Good Luck Charlie that we have probably seen at least three dozen times}, we had an amazing night. She squealed with delight as we had a popcorn party...throwing popcorn at each other {not even aiming for our mouths} because hey, we can vacuum up our mess later and because sometimes you just need to throw popcorn to have a good time...
You might want to get the tissues ready...during the first week we were home Rick went to the grocery store. On the way out the door he asked Kayla if there was anything special he could bring her back from the store. Her answer? "Daddy, could you please get me some pretty pink flowers to give to Mommy?"...I swear this girl melts my heart. I mean seriously...I cry every time I think of that moment. That moment will stay with me forever. Her selflessness, her pure love. Nothing in this world is like it...
These past eight weeks have been filled with sleepless nights and amazing moments. Kayla is adjusting to sharing our love and being a big sister. She hasn't suggested to give him away or place him on the curb with the trash so we consider that a win. She loves giving him his binky when he cries...even if that means leaning on his swing with all of her weight and forcing the binky into his mouth {insert me holding my breath...hoping that the swing, Logan and Kayla don't hit the floor...but how would I ever interrupt that moment by telling her to stop?}. She always hugs and kisses him goodbye before she leaves for school and before bedtime. My lap is now somehow always shared by two.

So much has happened in these last eight weeks and I promise to fill you in soon. Until then, I will leave you with this...